Navigating Health Insurance Hell

I am one month into my new health insurance plan, and I’m more confused than ever.

I’ve sent several emails. I’ve engaged in a number of live chats. I’ve made countless calls to my insurance company, my insulin pump provider, a mail-in pharmacy service, and my CGM provider just to try and get some answers. And almost every time I hang up the phone or walk away from the chat service, I feel lost because nothing is clear to me.

Am I stupid?

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I can’t be the only one who just doesn’t get how it all works…right?

Why can’t I just get definitive answers as to how much I’ll need to pay for insulin each month?

Why does my health insurance company advertise a partnership with a mail-order pharmacy that puts a cap on insulin costs…when in reality, it doesn’t (or at least, nobody has informed me that it does)?

Why am I learning, at this stage in the game, that my prescription plan isn’t integrated with my medical plan, which means that any prescriptions I fill using the mail-order service don’t qualify towards my deductible?

Why is it all so convoluted?

As mystified as I am by all of this, I’m coping with a strategy that my parents have helped me develop, which I’ll share with you: Anyone who is going through all of this right now, or anyone who is about to go through all of this, needs to remember to be their own advocate. (I’m reminding myself to do this on the daily.) Frequently, I tell myself that I have every right to make as many phone calls or contact efforts as needed until I understand the costs associated with reordering my supplies. Although it’s easy to get frustrated when a representative on the phone speeds through an explanation or provides contradictory information, it’s important to stay focused on the task at hand.

As I continue to figure all of this out, I’m going to take note of questions that crop up and have a notepad and pen in hand any time I make a call. I’m keeping track of all messages exchanged online and I’m using the next couple of weeks as my fact-gathering stage. It’s almost like I’m assembling pieces to a puzzle…a ginormous, complicated puzzle, but one that will result in a more complete picture of the cost of my prescriptions going forward.

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The $2,000 Mistake

Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.

Hello, 26…and Goodbye, Health Insurance

Well, today is my 26th birthday. As I alluded to a few months ago in another blog post, I’ve pretty much been dreading this particular birthday.

Love always wins.

Today’s the day I’ve got to switch health insurance carriers. I’m going off my parents’ plan and signing up for the employee plan offered by my company.

Am I nervous? Yes. Am I scared? Hell yes. But am I alone? Hell, no. I’m lucky enough to be able to say that I’ve got so many resources in my life – family, friends, the DOC –  who will help me navigate the confusing world of health insurance.

I’m also well aware that many, many other T1Ds have been in this position before me. While it’s impossible to forget the horror stories about people who have been unable to afford their medication due to a lack of insurance coverage, or who have a hard time paying for insulin and other diabetes supplies in spite of having health insurance, there’s so many more people who have found ways to make it work without having to sacrifice their health or general well-being.

So I’m going to focus on how blessed I am to have resources all around me, as well as a job that offers decent health insurance (or just a job, period…there’s plenty of jobless people out there who have double the hurdles to jump over compared to someone like me). Today, I won’t dwell on my fears and anxieties about health insurance. Instead, I’ll celebrate another year of life and enjoy the day.

Why I’m Afraid to Turn 26

I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?

But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.

to my best buddy,
I don’t want a cake or presents for my birthday this year. I’d rather affordable health insurance.

This is terrifying to me. Why?

I’ve heard the stories.

Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.

He passed away just one month after going off his mother’s health insurance plan.

His family believes he was rationing insulin in order to survive until he could afford to buy some more.

There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.

I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?

One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.

And that is the simple truth of why I’m afraid to turn 26 this year.

Any Pods to Spare?

Not too long ago, the following message appeared in the inbox of one of my social media platforms:

I’m so sorry to bother with something like this. I down to my last pod. And.. currently I’m having insurance issues.. I was wondering if there were any pods you could spare? I’m trying to search around. Or if you know anyone that does have extras? Or samples? I would hate hate to return to multiple daily injections.. I know u understand that. If not it’s ok. Sorry to bother. I don’t know where else to try apart from everything else I’ve tried

When I read it the first time, my heart immediately sank. The message was fraught with desperation, as evidenced by the typos and fragmented sentences. My gut reaction was to reach out to this person and let them know that everything would be fine, that there had to be an option out there that would help them.

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No pods to spare.

My next reaction, though, was pure skepticism. I’m not proud to admit that, but here are the facts that I was facing:

  1. I did not know this person. I tried to look at their profile to see if I could learn more about them, only to discover that it was private. I couldn’t see any of their information, other than a minute profile picture and numbers regarding their followers/activity.
  2. This person said they might be forced to go back to MDI. Personally speaking, if I ran out of pods and had to go back to shots, I wouldn’t like it – but if it was my only option, then of course I’d do it. I did it for something like 17 years before ever trying a pump. It sounded like this person wouldn’t want to do it, but…
  3. Most importantly, I do not have any pods to spare. I’m not sure why this individual thought that I did. It seemed like they’ve been asking as many people as possible on social media for pods, which makes me believe that they’re exploring the #omnipod or #podder hashtags. Regardless, I rely on regular shipments (every three months) from Insulet in order to maintain the bare minimum of pods that I need. And I can’t exactly give up “spare pods” that I don’t even have.

As horribly as I felt for this person, I had to take into consideration the facts that were in front of me, as well as the unfortunate truth that you can’t trust everything on the Internet. I told them that they should try to reach out to Insulet for assistance, and that I would be hoping for the best for them. I know that my kind words probably brought little comfort, but it was all that I had to offer to this total stranger.

The whole exchange haunts me. That’s why I want to know…

What would you have done if you were in my shoes?

Dexcom Drama: Waiting for a New CGM

It all started when I realized my Dexcom CGM wasn’t holding a charge. It went from needing a charge twice a week to practically every day. I knew this wasn’t right, so during the first week of July, I found myself reaching out to Dexcom support to see how I could go about getting it replaced.

Three months later, I finally have my new Dexcom G5 CGM.

Of course, it shouldn’t have taken most of July, all of August, and part of September for me to get my new CGM. But it did, and resulted in my mother spending hours on the phone with Dexcom and our insurance provider on my behalf as well as countless communications exchanged between me and my endocrinologist’s office.

What was with the holdup? There were a few factors at play here, which is why I thought it was important to share this ordeal with you all. That way, if you or a loved one encounter an issue like this in the future, maybe you can learn from my mistakes and get your CGM sooner rather than later.

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At last, my new (pink!) Dexcom has arrived.

Factor #1: The CGM was out of warranty. Normally, I would’ve had it replaced much faster if my Dexcom drama happened within one year of initially receiving the device. But I’d been using the same receiver (the handheld component of the CGM that displays blood sugars in real time) for like…four years. That was issue number one because Dexcom can’t do anything about products that have an expired warranty. Now, I know to get in touch with them every year to get a new receiver and to ensure that I’ll always have one that can be replaced.

Factor #2: My medical supply providers have changed recently. This one’s a bit out of my control, but a couple years ago, Neighborhood Diabetes was divested and sold to Liberty Medical. This meant I wouldn’t receive my sensors or any other CGM supplies from Neighborhood, like I had for a few years. So from then until now, I was getting my sensors from Express Scripts, which also ships my insulin to my home. But for other reasons, my mom and I discovered back in August that we would need to use Better Living Now to supply my Dexcom sensors. Getting confused yet? Yeah, this all went over my head, too. I’m extremely lucky that my mom helped me out and solved this confusing insurance situation.

Factor #3: Communication was poor. And I have to take some blame here, because I should’ve been checking the inbox that my endocrinologist’s office uses to communicate with me. I missed a couple of messages sent by a nurse at the office, and when I did finally see them, I was in a rush to reply and didn’t read his messages as thoroughly as I should have. This resulted in, I’m sure, frustration on both ends as we tried to explain what was going on to one another. There’s a reason why people say that communication is key, and I bet we would’ve had answers a little sooner if we had been on top of things.

That’s the story, in a nutshell and without getting too much into the insurance side of things. I’m just relieved that I finally have my new CGM, and it works great. It’s pretty cool to see my blood sugars displayed on my iPhone, too, using the Dexcom app. And I’m pretty grateful that I have an awesome mother who really came through for me, as well as an endocrinology team that was willing to bear with me through all this Dexcom drama.